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20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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2/9/12

Mother's guilt

 

When we found out that Rocco had Type 1 diabetes, he weighed 21 pounds. He was 22 months old, still in diapers. He knew how to walk and hmostly knew how to talk. He did know the word "ouch", but in the first year of 10-12 finger pokes and at least four shots per day, he only said it to me once.

 

I remember it vividly because I had been expecting to hear him complain for a long time. I cringed every time I had to check his blood sugar or give him an injection of insulin. It had to hurt, right? One night, it finally happened. I checked his blood sugar while he was sleeping, and, as I poked him, he sat straight up, looked me straight in the eye and gave me the meanest look. He said, "Ouch! Mommy that HURTS"growling out the word "hurts".

 

At first, I remember feeling relief. Relief for, I guess, finally having him tell me how he really felt about the needle hitting his fingertip all day, every day. But, when I look back, and if I am really honest with myself, what I felt was relief that finally I was getting the pain I knew I always deserved. His words stung me like a knife cut, but the pain I felt from his words eased my guilt. The guilt I had felt regarding him getting diabetes. This guilt was a weight that I had strapped on my back the day we entered the ER and constantly carried with meIt was like a blanket I wrapped around me every day as I woke up. Oddly, my guilt felt familiar and safe. 

 

How could I have allowed my little guy to get this? Did I do this to him? Was this what God was trying to tell me while we tried so hard to conceive these little guys and couldn't? Was he saying, "I am not going to give you these angels because this little one is going to have a lifetime of suffering if I send him down to you"? Did he get this because we did in-vitro? I tried everything to become pregnant and become a mom. Did I push too hard, causing my baby to suffer because of my selfish desire to hold him in my arms? Did I do this to him because I was unable to breastfeed while he was an infant due to my congestive heart failure after their delivery?

 

So for him to finally "blame" me and growl his anger at me, I felt relief. I felt like I was finally being given the punishment I deserved for doing this all to him.

 

Cognitively, I am aware that none of this is actually the way it all worked. I do not really believe God punishes people or babies. I do not believe that breast feeding or in-vitro impacted his diagnosis. But it is amazing how deep a mothers guilt can go, isn't it? It can burn you so deep in your soul that the most irrational thoughts can become your reality.

 

My friend once told me during the first month of her son's diagnosis, he had a seizure. It turned out he had a sensitivity to insulinThis cruel joke can sometimes happen. Her husband was out of the country and she had three other kids at home. She held him in her arms, as he seized, while she tried to read the instructions on how to administer the Glucagon, a life saving injection of glucose sent straight to the blood stream. She said she has seldom slept through the night since and hasn't ever forgiven herself. I related very well to her when she told me this story. 

 

Also, I recently read an article about general practitioner's guilt when his daughter went undiagnosed for a while.  He didn't add up the signs of her diabetes - extreme thirst, going to the bathroom a lot, lethargy, and agitation. These signs are easily dismissed because most people just think their child is going through a phase or is just hot due to warm weather. Each one of these symptoms can be explained in a myriad of different ways, but once all put together, they can add up to a diagnosis of Type 1 diabetes. 

 

A parent's guilt can be overwhelmingespecially when it relates to something that is life-changing for a child. Our job is to protect these little ones. When we can't protect them from all the world's hurt, it is easy to go into hyperdrive and transfer our energy into guilt. It has been four years since that day when Rocco growled at me, and I can say I am still working through the guilt. I am trying to move forward into a healthy, happy family life that isn't overshadowed b"could haves" or "should haves".

 

Tell me your mom or dad "guilt" story. It is actually kind of therapeutic. I'm happy to give you the platform. Please, share...


2 comments:

Heather said...

Hi Shari. I am followingyour blog from the link you posted on the facebook page Parents of Children with Type 1 Diabetes.
I also blog, have twins, and a diabetic child. Although my twins are not diabetic, its my oldest.
I would love for you to visit me if you get the time at http://teensntoddlers.blogspot.com/

Look forward to reading more.

Flying_Monkey said...

One of my "best" guilt stories has to do with my non-diabetic son. He never gets sick. Oh, the occasional low fever or earache, but I don't think he's thrown up in close to a decade. I usually think he's exaggerating (if not outright faking) when he takes a sick day from school but I eventually give in. 2 summers ago, days after school was out, he was supposed to be packing for a 4-week trip with his dad. He had a stomach ache. He was laying around and I kept having to tell him to perk up or "will I have to tell your dad you don't want to go?" The fact that he still didn't perk up and do anything should have been my sign, but I was impatient. Every time I went in to check on him, I'd nudge him with my foot (he was usually on the floor) or threaten to step on him. 13-year-olds usually think me trying to step on them is greatly amusing. I finally stood over him like a drill sergeant to get those last items packed. Grandma offered to take him over night, and I said "he's being a lump, but here he is!" We all thought he was constipated! Grandma gave him suppositories and warm compresses and took his temperature a half-dozen times. Dad and Grandma woke before dawn and tried to shovel him into the car, but he still wouldn't budge and said his stomach hurt worse. His temperature was a little over 100. They called the family nurse and she had them all kinds of worried (while I blissfully slept) about what it could be. They took him to the ER and he was sent for an MRI! They called me. I got there in time to see him struggling to get onto the MRI platform. His appendix was so inflamed, it had ruptured within hours before going to the ER. This means it had probably NOT ruptured when I handed him over!! Cut to the chase: 1 week in the hospital, bribes to get him to walk (He got a panda from the gift shop if he would walk to it 2 days in a row), and a very delayed visit to dad. Let me tell you... tummyaches have been taken a little more seriously since!

And the icing on the cake: my dad flew down to see the boy in the hospital and ended up driving him to the airport. The airline didn't like the e-ticket I bought and made my dad fill out more paperwork and a $50 fee for an "unaccompanied minor." Boy got to the other end and they refused to release him to anyone other than "the person who signed this paperwork." WHAT? Wasn't that the point? One person flew to Denver and one flew to Florida!? If they'd just left off the stupid extra fee, he wouldn't have spent an additional 2 hours in the Denver airport unable to even make a phone call. When my dad finally landed in Florida and turned his phone back on, HE had to clear up the mess since HE was the "person who signed this paperwork." Sheesh.